Wednesday, August 26, 2009

What Do You Say?

By Rose Carlson

One of the things I hear most often that is upsetting to bereaved parents is the many insensitive and sometimes downright mean remarks that nearly everyone hears at one time or another. Their disbelief at the things people actually have the nerve to say is generally followed by feelings of wishing they could come up with the perfect reply or the perfect way to handle these thoughtless comments and the people who make them.

Because of this, friendships and other close relationships are often never the same. I always find it very sad that on top of losing a baby, anyone has to lose a friend, too, especially when it’s due to someone saying the wrong thing, or even worse, saying nothing at all. Many times, the people who are closest to you, who you expect to understand your grief and pain the most, are the ones who end up being the most hurtful.

After each of my miscarriages, I was truly shocked and amazed by the words that came from my friend’s and loved one’s mouths…things like: “You’re young, you’ll have more babies!” “At least it happened early.” “There was probably something wrong with ‘it,’ you should think of it as a blessing.” (Oh, really? A miscarriage is a blessing? How exactly, I wanted to ask.). My favorite, “It’s been a MONTH already! You need to get over this!”

I always assumed that the reason people said such things to me and others who have early losses was precisely because they happened early, before anyone except the mother feels much of a connection to the baby. However, after starting my job at Share, I quickly discovered that pretty much anyone who has had a baby die at any time during pregnancy or shortly after birth is likely to hear the same things, and many times, even worse things.

I am routinely stunned and horrified by what parents who have had later losses tell me…like the mom who was told after her daughter was born still at 20 weeks, “At least you hadn’t done a nursery yet.” Or the mom who shared with me that her grandmother told her after the full term stillbirth of her third child, “Oh well…you didn’t need another baby anyway.” Or the many parents who are told “Count your blessings! You have other children!” as if that makes the death of one okay. Or, “It wasn’t meant to be.” The “ors” could go on and on.

Even though it’s been many years since my own losses and I no longer harbor any ill will to those who said such insensitive things to me, I frequently find myself shaking my head in disbelief and outright anger at the things people say. I like to think that we as a society have come a long way over the years in the way we respond to parent’s grief, but sadly, that is not always the case, even though the medical community has become more aware of the needs of the bereaved parents they care for.

However, the support of the medical community ends when the parents leave the hospital without their baby and are plunged back into real life. Family and friends are typically supportive in the early days and weeks, but then many times, something happens. It’s as if their patience wears thin. That is when the “you need to move on” types of comments begin. I hear and read it again and again.

Once the questions about when you are going to get over this start, something else often happens. While the grieving parent’s world has come to a screeching halt, everyone else’s life eventually moves forward. It can be difficult if it seems as if those who were so supportive at the beginning no longer want to hear about your sadness, so you may stop talking about it, which can make everyone around you think you are moving on, when nothing is further from the truth. It’s a vicious circle…one which many times leads to misunderstandings, hurt feelings and sometimes permanent damage to once-close relationships. At this point, it is easy to become angry with your friends and family members who don’t respond or support you the way you wish they would or the way you need them to.

So what is a grieving parent to do? When you are in the depths of grief and feeling vulnerable, it can be difficult to come up with the right thing to say in response to someone who has just said something upsetting to you. I always thought of the most perfect comeback response later.

With many years behind me since my miscarriages, and seven years spent at Share talking to bereaved parents, I’ve heard many ideas on ways of handling those who just don’t get it. I have also discovered that most people want to get it, they want to understand, they want to help, but they simply don’t know what to say or do. And what NOT to say or do. And sadly, most feel as if they are being helpful when they say the things they say.

The best way to deal with people in that situation is to be honest. Tell them that what they just said was hurtful and why. Tell those who seem to ignore you in your time of need what you need from them. I think you will find that for the most part, people are genuinely concerned and sorry when they realize they have been hurtful to you. Of course, there will always be those who no matter what you say still think you are not grieving the “right” way, and there is nothing you will be able to say or do to change their minds. In that case, give yourself permission to limit the time you spend with them as much as possible, at least until you are feeling stronger.

Something that others have found helpful is to write an open letter to family members and friends. When I first started volunteering at Share, I was reading a newsletter one day, and there was a letter in it that a bereaved dad had written. I don’t remember the entire letter, but he basically wrote what he and his wife were going through, and exactly what they needed (and didn’t need) from each of their loved ones. He did so in a loving way without accusing anyone of doing anything wrong. He closed the letter by saying that he hoped they understood. He also told them to keep in mind that whoever was receiving his letter was deeply cared about by him and his wife…that he was sending the letter because they didn’t want to lose any one of their loved ones from their lives due to any misunderstandings that might arise during this very tragic time. I remember reading that letter and thinking how I wished I had thought of something like that, and I often suggest the idea to parents and grandparents.

Try to keep in mind that most of the time, friends and family say the things they do because they want you to be “back to normal” when it is unlikely that you will be. Unless they have been through what you have, they have no way of knowing that. Even though it may be impossible to believe in the early days, you will feel better, you will laugh and be happy and smile again, but you are living a new normal now, and that can be hard, if not impossible, for others who are close to you to accept.

While it seems unfair that in the midst of your grief you have to worry about ‘teaching’ others the best ways to be supportive of you, that is often the way it works out if you want to keep those people in your life. When you are grieving and not feeling as if you are receiving the care and support you need, it’s easy to be angry at your friends and family members who seem to have moved on and don’t respond the way you wish they would.

But at the same time, unless they have been through a similar situation, they will not necessarily know the right way to be helpful to you, and you can guide them…let them know what you need. Just as this is a new and scary journey for you trying to navigate through the confusing maze of grief with it’s many twists and turns and uncertainties, so it can be just as confusing for your loved ones in learning how to be supportive to you as you walk this journey. By being honest with them, it can lead to an even deeper relationship than you had before.

Finally, while it is not easy to do, try to remember that most people who love and care about you want more than anything to be helpful, to ease your pain. But, it’s impossible to do because really, there is nothing that can ease your pain. I work at Share, and even I sometimes have a difficult time coming up with the right thing to say. A couple of years ago, my sister had a little boy who was born still, and I was utterly terrified of saying or doing the wrong thing. Since then, I always think that if someone like me, who spends every day working with and supporting grieving families, questions whether or not I am saying the right things…imagine how challenging it must be for those who haven’t walked this path.

I’m not saying that if someone has said something hurtful that you should just say, “oh well…she meant well.” Not at all. What I am saying is that giving someone the benefit of the doubt, opening the lines of communication, and telling those who have been hurtful or insensitive that they have been can be an important step in ensuring that the death of your baby doesn’t mean the end of a friendship or other relationship that is important to you.

What are some ways you have handled insensitive and hurtful things that others have done or said in the time since your baby died? How did the person respond to you? Did the things you said change anything?

Tuesday, August 11, 2009

Grief Season Opens Early by Cara Tyrell

“They stocked the stream yesterday” I hear annually. Within hours the fishing poles, tackle and canoe have been unearthed, readied for the next days use.

“Got your license yet?” is the popular question months later as clever deer take cover and less intuitive ones end up in our freezer.

Vermont is known for its seasons and not just the classic four: Summer, Fall, Winter and Spring. No, here we trudge through Mud Season. We sweat through Hay Season. We swat through Black Fly Season. And, this year, the Rainy Season seems to have come to stay.

What is less attended to is Grief Season. This season is a sneaky one. It does not arrive preceded by rain, or mud or sun. There are no marking flowers or distinct temperatures associated with it. No, that isn’t entirely true. If I stop and focus; if I look, listen, and feel the signs are everywhere: a slight chill in the air, the promise of Fall within weeks, leaves starting to look more crisp than the week before, and a slightly red tint on the leaves of Emma’s burning bush.

This is my grief season. Much like J.K. Rowling’s love potion, the signs are different for each of us. Ordinary parts of perfectly good seasons become omens of rough days to come. She was due on the 6th. . I realized she was gone, then labored through a deluded haze on the 7th. She was born on the 8th.

Annually, I have come to recognize these signals, taking emotional cover. Every August, the roughest segment of road appears marked by a bright yellow road sign: CAUTION - SEPTEMBER APPROACHING – 14 DAYS – SHARP TURNS AHEAD.

And yet, is seems my grief season has begun early. Even if the signs are different, I fear it has arrived early. Without warning my body hurts, aches, head to toe. I am plagued by constant fatigue. My migraines have returned with vengeance. Armed with prescription meds I can keep them at bay, but they are always there ready to attack with the slightest provocation. My mood, so recently light and flexible to match our summer schedule, has become darker, more subdued with the regrettable side effect that I find myself barking at people more and more. Wait! It isn’t time yet. I’m not ready yet. Oh, just breath – I’ll test this theory.

I smell the air. It’s still hot and sticky. I search the trees. Their leaves still look supple and lively. I inspect her burning bush. It is pregnant with growth this year, just as green as its neighbor – not a hint of red.

Don’t ask…no, don’t. But I can’t help myself.

Why? Why the shift in schedule? Does this mean it will pass and dissipate earlier than usual too? Doubtful. So, why the assigned extension?

I could attempt to answer this rhetorical query.

Because I am going back to work.
Because this magical year of writing is coming to a tapered end.
Because babies are still dying.
Because my commitments will cause me to be ‘less Emma’s mother’ again
Because I’m sharing pregnancy after loss anxiety with the members of our support group who are trying again.
Because on September 8th she turns nine years old.

Because…Because…Because

They are only guesses. Some might me more accurate than others, but it comes to the same end. I passed the road sign. My Grief Season has come early this year.

What are your grief season signals? How do you meet it head on?